Mishy - that sounds very scary .I hope you don’t have to cancel your break .October sounds a long time off to get some advice /progress re your symptoms .Ive been on the “have I got mets road” since May and in that time all my symptoms have got worse and more worrying - I just want to get on with treatment now if it is mets.
Helena yeah although i now haven’t taken any since my last dose on Wed evening feel like it could be neck related?? It was a terrible feeling like a numbness in my face and head but every movement i could feel through my spine if tbat makes sense and my arm strength feels weak so i think it is wise i call neuro i read my mri report and it states i have possible early cord myelopathy so i hope the symptoms are not that starting to progress!!!
Jill i think its awful you have been dealing with this worry since may as you say if it was which i sincerely hope it isn’t you want to get on with things i am sure if you rang your onc’s secretary and explain he ir she would look at your scan to check
Im doing that tomorrow as i feel as i am in the 5 year surveilence with my oncology team i should keep them in the loop about these things as there could be some relevance
Helena yeah the gabepentin are used for neurological pain for conditions such as MS nerve damage etc
Chick hope you enjoyed Scotland im watching the Tattoo on telly we normally go every year had to cancel last year as having treatments and didn’t book this year as too late for tickets so i hope i don’t have to cancel my little trip xxx
Going to see orthopaedic Consultant at 2pm ?
Thanks Helena .
Jill i hope everything went well at your appointment today and you finally got some answers ?
Chick hope you weren’t in the scanner too long ? it can take a bit time to have it done i fell asleep ? the woman was surprised i found the noise disturbingly relaxing but like white noise, don’t forget to ask for the report when it comes back, i did just really helpful to have it on hand if you see different doctors armed with info and all that had a much better day today so fingers crossed i did ring tge sec for neuro doc explained what had been going on she is emailing him then will ring me when he replies i thought it would be better than keep going to gp hes the expert at the end of the day and it could be normal for this whatever it is going on
Wow Chick you have had a carry on haven’t you its right what your saying after our experience we want to be free from other issues pain worries etc i feel i can’t move on at all and there’s a a but of me thinks how the hell could do the cancer stuff just to end up like this, surely i deserve a break which is a totally nonsensical thing to say as you cant control anything but pain and worry do have that effect
Jill again sending you big ???arms for today’s appointment i hope it has gone well xxxx
Helena apparently we are going to have a lovely Seot so you might be able to cram some nice tgings i before you have your surgery and sone relaxation in the garden afterwards xxx take care ladies xx
Ooh that was meant to say September weather Helena ?
Hello ladies - well I thought I had had some conclusion after weeks of investigation as the ortho said bone scan report showed multiple bone mets and showed me the hot spots which seemed to be widespread .Have to have pin in my femur as it is a risk of fracture .Rang breast nurse who was very shocked as I had a very tiny cancer and said they would discuss at MDT meeting yesterday .They looked at my scans and said they were confused - MRI was not conclusive ,CT scan suggested trauma to ribs ( they asked if I had been in a car crash) and they have never seen a met in the heel - so despite bone scan saying mets they are not 100% so they want a bone biopsy before considering starting any treatment - is more anxious waiting - gone from being told I have mets one day to you may not the next ?? Whatever is going on it is causing my bones to fracture .
Hello Jill1998
In a bit of a rush for appointments this morning so quick message. Everything crossed for you and you know I am thinking about you.
? ??? ? X
Ih Jill how awful for you your head myst be all over the place i really hope they get you some definite results soon im really sorry that you are going through this to tell you its mets on one hand then on the next maybe not i sincerely hope it isn’t Jill but awful for you either way isnt it this is the frustrating thing, why didn’t orthopaedic send you to onclogy straight away instead of faffing about like this, im sending you ??
and virtual hugs to let you know your bcc ladies are rooting for you xx im sorry this wasn’t what you were expecting from your appointment Jill xx
Could it be osteoporosis Jill? As i mentioned before my mam was having terrible problems with pain etc fell not hard broken hip very bad break especially given her age was young for this type of thing they ordered a dexa scan an she was confirmed she had it was thinning her bones which made her susceptible to breaks this might explain your ribs as a friend if mine who also has it broke hers coughing im no expert mind Jill just know of a couple of people
I will keep everything crossed for you xxx
No I expected to come away in a plaster cast - not as a basket case - husband and I just drive round for 2 hours after appointment - couldn’t think of what else to do !!! Then just as I was starting to get my head around it -someone pressed pause .It really scares me that things seem to be getting worse and I have issues in my spine and no treatment as yet identified .The surgeon also scared me as he wanted to operate on me that day in case my leg broke !! I said no - I couldn’t cope with that on a day I had been told I had secondary cancer - I needed space to think and get organised for op - he seemed surprised - the nurse says she completely understood though !!
Hi Mishy ,I have asked about osteoporosis at each appointment - ortho people seemed doubtful but Breast nurse said it was discussed in their meeting - only scan I haven’t had is a DEXA scan !!
Jill get that scan now the bc team are involved things should get moving for you niw i really feel it for you its so frustrating more waiting be kind to yourself over these next few days you have alot to mentally digest xx
What treatment did you friend have for osteoporosis Mishy - did it help prevent further fractures ?
She had tablet form of bone strengthening drugs my mam also takes something i will find out the name for you i remember when we went with my mam they said it can be heriditary which is why i want mibe checked Jill i will let you know later when I find out x
Yes it did i meant to ask xx
Sorry meant to say x
Thanks Mishy .Guess nothing else is going to happen now til after op .
Jilk hi it was aldronic acid every few months my mam also has to take vitamin d3 daily i was difficient in it after chemo so took the prescription dose xx hope you are ok
Chick how did you get on today hope all went well had calk from neuro they want to see me Saturday coming xx
See you are up in the early hours like me Chick pain from the rib fractures has now kicked in after throwing up with some force on Wednesday night and I am finding it impossible to get comfortable in bed and having bad legs ,back and ribs doesn’t give me many options.Dreafing how I will cope in hospital with major leg wound too.Chick I can sympathise with the MRI experiment - do you think being cold and unempathetic is part of their job description -the MRI people were the same with me .CT scan and bone scan people a lot nicer .I try not to take strong painkillers once it gets to this time of night as they zonk me out and can’t wake up but think I’m going to take half and hope for some relief xx